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Topic: Mets Members: Could you share your insight?

Forum:
Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Are there instances when you rely on a source of inspiration or a strategy for motivation to help you to get through times of struggle when living with stage IV disease? If so would you be willing to share what you do?

I love nature! If I need to quiet my mind, I go outside and it seems I can always find something beautiful to focus on...birds, butterflies, how the sun shines through trees,etc.

For motivation I have 2 horses and 2 dogs. Taking care of them or plying with them gets me Going. You might laugh but there are days like today, when I don't want to get out of bed, but I have a horse with skin issues and huge needs special medicine done. I got up because I was not going to let him suffer just because I overdid it yesterday. Then the dogs needed to be fed, I had a meeting this afternoon about a local support group I want too start here locally. Next thing I know its late afternoon and I have been productive all day!

One other thing, laughter! This morning a friend posted an old comic clip of Red Skelton. I laughed until my stomach hurt! Find a funny book, a clip of a comedian and have a good belly laugh!

I've created a playlist on Spotify and added songs that I've found encouraging, grounding, or peace inspiring. When I'm having a panicky dayor start to worry, I play a few of those songs to help me get back on track.

My art is what takes me away to another place. Focusing on a beautiful project leaves no room for ruminating on the dark stuff....I feel a sense of accomplishment which is important to me and it is something I will be leaving behind for others to enjoy and remember me.

I don't know if this qualifies as a strategy exactly as it is a bit complex but below is the approach I have taken to deal with my ups and downs. I do want to make it clear that there are times, like everyone, when I struggle. But so far, those days have been few.

What's my strategy? I remind myself that each story is unique and that my situation is not dictated by old statistics. I also have a bit of a mantra: 'There are two ways to do this - Crying, gnashing my teeth and playing the blame game, or rolling with the punches, staying positive, laughing and working through the options with my oncologist as if he is a partner in crime rather than only my physician'. Ultimately, I feel that, for me, all the crying, worrying and anger will do little to change this story. If anything, it might have a detrimental effect. Instead I choose to live, laugh and enjoy. (I also refuse to give up life's little pleasures, primarily 🍷.)

Recently a colleague asked me to go for coffee. She has recently been diagnosed with stage IV lung cancer and was amazed at how good I looked (despite the twice weekly drainage of my lungs and the Ibrance fatigue) and my overall positive attitude. I explained my mantra to her and I do think it helped (and BTW she has had some positive news from a recent scan). Ultimately it comes down to one thing.... I absolutely refuse to wallow. Not in my DNA!

My personal mottos and mantras are "Why am I going through all of this to try and prolong my life, if I am not going to go out and actually live it?" and "I am more than my diagnosis". Repeating these things myself help me during my down days to motivate myself to do "small" or "normal" things, like meeting a friend for lunch or a movie or shopping.

I also find that advocating (being a member of the metastatic breast cancer alliance), fundraiser (Im the op individual fundraiser for The Breast Cancer Research Foundation), and sharing my story and experiences (as a writer and staff member of www.theunderbellyorg) are all motivating. Helping advance research, understanding, and policy for MBC on behalf of all MBC patients, myself included, helps keep me going. Knowing that I maybe working towards potentially preventing others go through what we are all currently going though is a huge motivating factor.

I have a question for people in this forum. I would like to know how, if they had Taxol infusions, they experienced them.

To me, taking a drug that is very hard on the body could be worth it if recovery and healing is the end result.

For me, however, there is no cure--I'd be having the infusions purely and only to prolong life, even a life that could prove to be unbearable because of Taxol side effects.

So, taking such a drug, in order to live sick from the chemo is something I question (for myself), and I'm looking for input from others in such a situation--people who have opted FOR chemo, and people who have opted AGAINST it.

So, if someone out there is on "end-stage" chemo, I'd very much like to hear your experience, whether you are happy with it, how many days during a cycle you're feeling "good enough," etc.

I took six rounds of taxotere last summer and lost my hair. It's back now. But found a nice wig, it helped.

Now I take Herceptin, perjeta and xgeva

Chemo affects you in a negative way, certainly, but untreated mets I believe are even more painful and fast if untreated. Chemo side effects are better than a completely unmanaged cancer.

Before I was diagnosed I often thought If it ever happened to me, I would choose not to suffer thru horrible chemo side effects as seen in movies, etc. BUT, chemo has not been as bad as it was in the past, they use things like steroids (which made me feel better than normal!), and they have better anti nausea meds. I never had nausea, but I had the prescriptions filled just in case.

If you are in pretty good shape to begin with, you may do pretty well.

I still work and have never stopped except for treatments, dr visits and vacations, even overseas, lots of walking and so on.

I would give it a shot. You can always bail out and take the gamble on not continuing treatment. But treatment will likely work for awhile, and if you cruise this website, there are a LOT of women living several years plus w grim diagnoses to start with. And living pretty well.

The best shot is asap with chemo. See how the cancer responds, you will likely be amazed.

My work as a teacher has been my inspiration. But, after living with this disease for 17 months, I am starting (again) to feel uncertain. I had a rough go of it as my Mother died in February 2016, I was diagnosed a few days later. I had surgery in April to insert a rod in my femur for stability and, so sad to say, my loving, wonderful partner of 13 years went home after my surgery and passed of a massive heart attack. In the meantime, I have been trying to move on and enjoy my life as it is. My docs are great and I have had rad, chemo and now am on immumo and hormone therapies. But, my question is this, does anybody with MBC just get tired of waiting for it to progress? I don't mean to sound crude or despondent, but I find it hard now trying to figure out my life with this disease. For example, do I go back to school in the fall or take advantage of my disability benefits. I would hate to keep working and then be so sick that I can't enjoy even the basics of life. If I go out on disability, I could enjoy my life for as long as I have it....I know this makes no sense...sort of like my life right now.

Marsha, for my first 18 months as a metser, I was only on an AI, which is very tolerable. With progression, I'm on Ibrance and faslodex which isn't too bad. I get fatigued more often but no real side effects other than that and the hot flashes due to estrogen suppression. I've told my MO that there is a limit to the amount of side effects I'm willing to put up with and will make the choice at some point to not do more treatment and if that will cause my death within a year, go on hospice. I live in a right to die state so that's also an option. It's an individual choice, some people keep trying different treatments until the end and some decide to call it quits at a point where the treatment becomes worse than the disease. We are all different

Last year my family had a series of crises, and I came out of it determined to live and to look for happiness, no matter how awful things got. In those days I frequently quoted Winston Churchill, "When you're going through hell, keep going." (Also, some Zen wisdom, "What's in the way is the way.")

Relax and breathe, I tell myself. Every day, all day long. I need all those reminders. Not everyone does.

I do better when I am focused on the here and now. We have a limited number of days here. All of us. But in Stage IV, we can't escape that awareness. Search for what makes you feel light, free, grateful, happy. Look for what elicits positive emotions. Forgive yourself and others. Be patient, be kind, be appreciative. Be curious, be open.

It's been nearly three years since my stage IV diagnosis, and I frequently forget that I have terminal illness. I feel okay right now, and it's a beautiful day.

Hi Nowaldron, I have a similar struggle - what am I supposed to do with my life? I was in hospital last summer for two months when first diagnosed as metastatic. I literally could not stand up and all I hoped for was to get out and to be able to go travelling with my kids - I didn't know if I'd ever leave the hospital (the word 'palliative' was mentioned several times). I was so thrilled to be able to move, and when I was discharged I stopped working and have spent the past year taking my kids to Hawaii, New York etc. I'm going on a cruise in August with my 14 year old son!

it's been a great year and I'm so lucky I was able to spend it this way. In many ways I've come to terms with my diagnosis, I've spent time with friends and family and working on my art, which I love. But I'm finding I need more. I was in the process of going back to school for my CPA when I was diagnosed - but the first few years are lots of work. I don't want to spend the last few years of my life stressing and fretting over something I'll never reap the rewards of. How much time do I have? If I knew I had six months, I'd keep travelling. Dare I hope that I have years? I know I'm lucky because I do have energy and most of my mobility has returned. Still figuring it out....

Thanks so much for sharing your story and welcome to the BCO community. We hope that you will stay connected here on the boards and meet others who can benefit from your posts and we hope that you will also find support and information form our members.Please let us know if there is anything we can do to help you with navigating your way around the community.

Unlike most people, I have a different way of coping with the bad times.

I let myself experience the feelings, the emotional pain, and have a great big pity party for myself. Rant, rave, swear, cry, sob, numbly watch TV, whatever it takes. After a day or two of this, the feelings leave and I can go back to my usual state of mind and my regular activities.

I know this wouldn't work for everyone - some people would just descend into depression. But for me, doing it AVOIDS depression. My friends know that I'm going to withdraw and isolate myself for a day or two and will be mainly out of touch. They've seen it happen enough now that they know I'll be back soon.

Of course, this is also possible for me to do because I am on disability (another word for living-with-way-too-little-money) and don't have to go to work. The little bit of work I do is at home and can be done whenever I have the urge.

You make perfect sense! Conflict is the name of the game: think in every way that might be true. I had breast cancer, did all the treatments and was clean (or so I thought) for three years--just got diagnosed stage IV breast cancer w/liver mets. May 2017. I thought I'd made it, but no dice.

I, too, get tired of being tired, let me tell you! Yeah, I wait for it to progress--I didn't at first till the doctor said "...when you get it again in two or three years, you'll be ready for chemo again.

It's the mind job that gets you the worst! Always messing with your peace. So I took my 13-year-old daughter to Wild Adventures in Georgia. I did that SkyTower thing. It's weird, if I hadn't been diagnosed again, I never would have gone though with the 200-ft drop. What a minute, where was i?

...you say you have friends and family...what does a MBC patient do when no one cares if she dies? what would your advice be to her? i'm an adoptee whose adopted parents discarded me; I have two children (one 27, one 13)--they really love me, but strangely don't care about me--they don't help me when i am swimming in pain. They don't help me when i can't walk to the bathroom or go up and down stairs, etc....i told my mom i had cancer a couple of years ago, she said "..go luck with that..." i haven't see my father in more than 20 years...i have a brother who lives down the street from me who wouldn't help me watch my daughter when i said I found a lump...i worked for a boss who deducts my pay and harrasses me when i try to get treatment...my daughter's father won't helps us if I don't have enough money to keep the lights on or put food on the table...what would you tell a woman with MBC who has nothing and no one? how does she find the courage to even wake up in the morning? what would you say to a woman, who has no hope?

vrtameshrew48, I've read your post three times and wish I could just come and give you a hug. Nothing I can say can give you the family support you need and deserve. I can only say I care....very much. Please be kind to yourself, let yourself cry it out and keep in touch with us all here. Sending you love

My strategy is actually the way I've always lived my life. I've never allowed anything external to define me, not any of the situations I encountered before I encountered cancer. Sure, cancer is a biggie but all the philosophies I've determined my life by are keeping my head above water.

Don't let your illness define you....you're more than your illness.

Be an optimist....I'm an optimist and I intend to always be an optimist no matter what happens.

Live in the moment...do what you enjoy and get lost in it.

Look for the joy in life...there's a lot of joy in even the tiniest thing, watching the clouds, sipping a warm cup of tea, reading a good book, looking at the way the sun glitters on the leaves in a tree, feeling warm and cosy on a cold day.....

Gratitude....this is the key to being happy when there doesn't seem to be a lot to be happy about. Start by finding three things to be thankful for each day. A warm shower is a good start. Even though we all know there are days when just taking a shower seems almost too difficult to even think about doing, it does feel good afterwards to feel fresh and clean. Each day write down the three things you're grateful for and soon the list will begin to grow, as your attitude becomes more positive.

A little treat now and then...buying yourself a good book. Chatting with friends on social media if it's too difficult to go out. Finding a hobby you've never tried or wanted to try before. I've started doing needlepoint even though I don't like sewing as it's something I can manage around my pain and I get pleasure from filling in the picture.

Know that there will be bad days and accept them but don't cling to them....everything in life is temporary.

Enjoy the good spells to the utmost but again, don't cling to them.....everything in life is temporary.

I am still really struggling with the stage 4 diagnosis and starting treatment. But, I have found a few things that help. I finally came up with a little saying to slow me down when I head towards anxiety. It is "Worry is normal and to not worry is fine." This helps me validate my feelings and realize that the worry should not be my only emotion.

Vryameshrew48: I am so sorry things are so bad. I can relate to feeling abandoned by people now that I am stage 4. With help from a counselor I realized that a lot of people (my 20 something kids included) are in denial about my cancer and how bad it is. It is confusing to see a healthy looking woman and realize she is ill. Your kids may just be protecting their hearts

My motto from day one has been " better me than one of my children". When I see other's children going through cancer treatment, I thank god he gave it to me instead of my own children. Makes it easier to bear the burden when you feel like you are carrying it for someone else. I am strong and mature. I can handle this, for they only need to be children while they still can.

Leapfrog, thanks for the tips. I love things presented in a list. Here's mine:

Read vrtameshrew's post and realize how lucky I am.

Read it again.

vrtameshrew, it seems you may be better off without the ex. My 32 year old son doesn't pay much attention to my cancer probably because he is in denial and also he is living his own life with his new wife. I'm glad that he is independent and doesn't need constant interaction with me. That is good for them. They need to be out on their own. Your kids are younger but independence is still good.

My approach is to just enjoy every single minute, whatever I am doing. I love a good book. I love a good meal. I love good music. I love a good movie. I just sit and say, "this is nice right now."

Hey Nowaldron i know how you feel i just don't know what to do. Do i quit my job take disability and enjoy whats left of my life and do things with my kids. Or do I go to work everyday and have nothing left in the tank to do anything with them. It

is such a weight on me. I was diagnosed with breast cancer in 2012.In december 2016 went to dr did not feel good thought i had flu. In march was told I had stage 4 mets in liver lymphnodes lung and sternum bone'. Did chemo now on maintinance numbers are good but being on my feet all day really bothers my legs and feet..Hope all is well mom55